Life in our preemie world: Stares

8 minutes and 12 seconds.

That is the longest amount of time that someone has full on stared at my daughter (that I noticed and timed out of pure curiosity). Granted it was a ten year-old boy but still. Awkward. When we go out places we often attract first, second, and sometimes even third looks from people. We went to Disneyland last year and two different people walked into something because they were looking at her and not the big huge bush in front of them.

For the most part I don't mind the extra looks. A two-year-old with oxygen is an unusual site indeed. Add her feeding pump and that makes for even more attention worthy notice.

I usually just smile at the kids that stare and then ask their mom or dad half whispered questions about "the thing in her nose." The 8 minute stare came from a boy who walked over and just stood directly in front of us while we were watching my son ice skate. I tried to get his attention to see if he had a question but nope - just kept staring.

My husband and I actually don't mind when people ask questions about our daughter. We want to spread the word about prematurity. Personally I do get a bit frustrated when people just stare without saying anything or ask "what's wrong with her?"

I know I'm not alone. I've talked to other preemie moms and dads that have had people stare at their child, ask ridiculous questions or compare how their kid is doing to yours. So I've decided we should fight back. Let's stare at all those weird full term babies who hit their milestones on time, are average size and basically "normal." Let's ask silly questions. Here are some completely tongue-in-cheek, just for fun suggestions to get you started:

1) How old is he/she? When they give their perfectly normal answer that matches the size of their kid than you ask - "Isn't it boring to have a child whose size is so...predictable?"

2) When they talk about how they only go to the pediatrician for immunizations/well baby/sick visits, than you say "So, you only have one doctor for your kid? I have 7!" We may not be able to beat them at some things but doctors - we win every time.

3) When they talk about how their kid did xyz at whatever age than you just stare for a few seconds and say "interesting." That will throw them off. Or you can say "doesn't that get boring?"

Do you have any strategies or thoughts about dealing with the curious people of the world? Please share!

Reminder - Summer Colds

Just a reminder for preemies and parents a like, just because it's summer and the weather is warm doesn't mean that you won't get a cold. Unfortunately I speak from current, first hand experience. After spending the entire RSV/winter season cold free, my son and I have come down with a nasty cold. It made me realize that I have been much more lax about hand washing after trips to the store and getting other people to use hand sanitizer when they come in. I've gotten myself back into "winter" mode in terms of germs so hopefully we can stay cold-free for the rest of summer.

If you're looking for ways to stay healthy, check out the Going Out and Great Soap Showdown posts for suggestions about keeping germ free.

Enjoy a warm and hopefully cold free summer!!

Toy? What toy?

Raise your hand if any of these situations have happened to you:

1) After days/weeks/months of being stuck inside, you finally decide to brave a restaurant. Like the prepared mom that you are, you have dutifully packed the diaper bag full of your preemie's favorite toys. The ones that he/she could play with for hours at home. Five minutes after being seated, all of those toys are on the ground and your preemie is getting close to a meltdown.

2) You're running late so you grab the diaper bag without looking inside and head to the car. When you arrive at the doctor's/friend's house/store you realize that there are no toys in the diaper bag. None. And your preemie is not happy about it.

If any of those situations (or something similar) has happened to you, never fear. I am the mom of a preemie who sometimes prefers anything but a toy to play with (or has become bored of her toys quickly) so I have created a list of things you can use as toys/entertainment when needed.

Paper - all kids seem to love paper. Give your preemie a piece of unimportant paper and let him/her crinkle it, rip it, shred it, whatever keeps him/her happy.

Sugar packets - these are great because they make noise when you shake them. They also come in different colors and can be stacked, put in a container, moved around, etc. If you have older kids, ask them to count how many of each color there is, stack them to compare the size, create a pattern, etc.

Water bottle - for my daughter a water bottle can be like magic. Especially one that is only 1/3 full. You can swish the water back and forth. Shake it to see bubbles. Roll it back and forth, etc. Arrowhead has a new bottle that is much easier to squeeze (and it makes noise).

Watch - My daughter loves to play with my husband's watch. You can put your watch on your preemie's wrist to see what he/she does.

Remote for your car - If you know that you have parked far enough away that your little one won't set off the alarm, give your preemie the remote for your car. Let him/her press the buttons.

Crackers - Give your preemie a packet of saltines to play with. The package makes noise and they can squash the crackers inside.

Sunglasses (especially if they are cheap or their own) - my daughter loves to play with her sunglasses. They have elastic on the back so she can bite it, chew on them or just play with them. Since they are hers, it's okay if she gets drool on them or drops them on the ground.

Diapers/Wipes - hand your preemie a clean diaper and/or wipe. Getting the chance to open/close the diaper or feel the wipe can be enough to calm your preemie down (at least for a few minutes).

"Look at that" - if you are in a new environment, start pointing out various things. Sound as excited as possible about each thing.

Just remember: If you are giving your preemie something that isn't a toy, keep an even closer eye on him/her to make sure they aren't chewing/swallowing/touching something they shouldn't.

Going Out, Part 3 – Questions

After the anxiety of strangers touching your baby, the second biggest complaint/issue that I have heard from preemie parents is the questions/comments you get. Depending on your preemie, people can ask “How come your baby is so small?” “Shouldn’t he/she be walking/crawling/talking/etc by now?” “What’s wrong with him/her?” Although some people may just be genuinely curious, there are a few that can border on being downright rude. Here are some tips to get through the situation as easily and quickly as possible.

The first thing that you need to decide is how much time you can or are willing to spend explaining your personal situation. If you are in a hurry, just not in the mood, or dealing with someone that doesn’t get it – give a quick answer and move along. If you have more time or want to educate/explain your situation than you can take more time to answer follow-up questions and talk about your personal experience with prematurity. Prematurity has been in the news a lot lately so more people may ask questions.

Here are some basic answers that I have used for people that ask questions:

- My son/daughter was born x weeks/months premature/early
- He/she was born weighing less than x pounds and he/she’s been catching up ever since (this answer is best said with a cheery tone and then you can move along to the next aisle/spot)
- With my son I sometimes just gave his adjusted age since his size more corresponded with that age than his actual age
- My son/daughter was born x weeks/months early so developmentally he/she is just x months old.
- A lot of kids don’t walk at 12 months. Since he/she was born early, he/she has more time to catch up so we aren’t concerned.
- Since he/she was premature his/her lungs/stomach/heart/etc are still developing
- He/she had to get xxx because of xxx. Give the short answer and then go from there.

If someone asks if you are worried about the long term effects of prematurity (based on recent articles), autism, or other related issues, here are some things you can say:

- Right now we are just taking it one day at a time.
- We are just thankful that our son/daughter survived – he/she truly is a miracle and we are blessed that he/she is with us today.
- We are really excited/happy about how far our son/daughter has already come or how much he/she has already accomplished.
- No one really knows how each individual baby will do long term. So far everything looks good. Or depending on your situation – right now we are just working though XYZ issues.
- Every baby is different

I think the most important thing to remember is that you can control the situation. If someone is rude or just not understanding, move along and don’t worry about them. You don’t have to answer their questions or explain everything. Be simple, direct, to the point and then say goodbye. As I’m sure you already know, many people simply don’t understand prematurity and the effects it can/does have on babies, parents and families.

Going Out, Part 2 - Signs

Over the years I've talked to a lot of preemie parents about the issues they have faced taking their preemie to places such as the store, the park, or a party. Pretty much everyone has expressed the same frustration - how to get people to stop reaching in and touching their preemie. Last week I wrote up some tips for ways to avoid people and germs while you're taking your preemie out places. I know that sometimes you have to get a bit aggressive with strangers who just don't get it. Some people have hung a sign from their preemies car seat or stroller. You can get signs from My Tiny Hands and Synagis or make your own.

I thought I would get you started with some ideas for making your own. Some of these are a bit over the top and just for fun. If you have a sign that has worked for you - please share it in the comments section.

Are you Purell'in?
She looks even cuter from 5 steps back
I was born weighing less than ____ pounds, please ask before touching me
I have Purell and I'm not afraid to squirt it.
Yes I do look healthy and I want to stay that way
The word germs with a line through it
I wouldn't touch you without asking first

Going Places, Part 1

With the weather getting warmer (in most places), RSV season coming to a close and the urge to get out of the house growing stronger, preemie parents are going to start taking their precious miracles out into the world. While most parents can't wait to show off their baby's to the world - preemie parents are often nervous, apprehensive and downright scared about the potential risk to their babies. It's a germ filled world and I don't know about you, but I can't help thinking I'm living in a Lysol commercial where you can literally "see" the germs everywhere.

Here are some tips to try and stay as germ free as possible during your outings.

1. Timing. If you are going to the store, try and go early in the morning when there are less people. If you aren't sure when the store's downtime is - call and ask. Any employee should be able to tell you when they are most busy or slow.

2. What to Bring - make sure you pack plenty of Purell (or any variant of it) and put the bottles in easy to find places. If you or your kids touch something "questionable," don't hesitant to put some Purell on. Put a pack of Clean Wipes in your purse or diaper bag. They are perfect for wiping down shopping cart handles or playground equipment.

3. Stroller/Carrier - Depending on where you are going, try and have your preemie stay in the stroller, car seat or baby carrier. When we take our daughter out in her stroller, I pull the sun shade down most of the way and then throw a blanket on top so she is totally covered. She's not a huge fan of this but it helps keep little (or big) hands from reaching in when we are in a crowd of people (like the doctor's office). A baby carrier or sling is perfect for shopping trips. Make sure to face your baby towards you - strangers are less likely to reach towards your personal space to touch the baby. Or if they do - they will only be touching the back of his/her head.

4. Keeping people away - if your baby is in a stroller or other covered carrier, the best way to keep people from trying to touch, cough or breath on your preemie is to tell them he/she is sleeping. This is especially useful for small children who are naturally curious about babies. Just gently tell them your baby is sleeping and slowly start backing up/moving forward so you and your baby are out of reach. If they can plainly see that your baby is awake - just tell them he/she is tired and then move along. A lot of people also use signs to gently remind strangers they need to be careful.

5. Outside vs. Inside - If your friends and/or family want to get together for lunch/play date, ask to meet a park. Or in a backyard. It's much easier to have kids play outside - they have more space to move around without swapping germs on every toy available.

6. Older siblings - While your protecting your preemie - don't forget about protecting your other children. Before we go into any store I have my son use Vick's Early Defense on his hands. We then Purell afterward - just in case. I also remind him that he shouldn't touch his face for the entire time we are in the store. Siblings can also be a helpful diversion from your preemie. If a friend or stranger wants to touch the baby - try and divert their attention towards your other kids. "Bobby is so excited about his little sister," "Alison is really excited about playing soccer," etc. Anything to move the focus away from your littlest one.

7. Take it slow - We've been stuck inside since July of last year so I know about the urge for freedom and well, spur of the moment shopping. You still want to take it slow. Try one trip and see how it goes. How do you feel? How did your baby do? If you take it one day at a time, you'll learn the best ways to handle things for you and your baby.

This weekend I'll post part 2 of Going Places - how to handle stares, questions and downright rudeness.